Overview
Based on 53 anonymised responses from SEND parent carers in Southend, Rochford, and Castle Point.
Focused on experiences with education, statutory services, CAMHS, EHCP processes, and the voluntary sector.
Education Two-thirds+ said their child’s needs weren’t being met at school.
Even with EHCPs, provision was often missing or tokenistic.
Mainstream schools lacked training, understanding of sensory/emotional needs, and neurodivergence-informed practice.
Illegal exclusions, part-time timetables, and off-rolling were common.
“They punish meltdowns, call it defiance.”
“He was out of school 15 months before anyone noticed.”
EHCP and SEN SupportWidespread delays (many >39 weeks), gatekeeping, and refusals to assess.
Non-EHCP “SEN Support” was described as vague, unaccountable, and inconsistent.
Many felt gaslit, unsupported, and forced to seek legal help.
“We had to hire a solicitor. It was that or give up.”
Statutory Services (CAMHS, Social Care, Diagnostic Centres & Local Authorities)75% reported them as hostile, blaming, and inaccessible.
18–24 month waits, refusals, and misunderstandings of neurodivergence were common.
Parents are often left traumatised, with no trust in professionals.
“I didn’t feel helped. I felt investigated.”
“They said he wasn’t suicidal enough for CAMHS to help.”
Voluntary Sector SupportSTRM was praised as a lifeline: trusted, knowledgeable, and empowering.
Other valued supports: SNAP, The Megacentre, Making Waves, IPSEA, and Little Heroes.
Families called for more peer-led, post-diagnosis, and cross-county services.
“I trust other parents more than professionals.”
Mental health decline, financial hardship, and family breakdown were common.
Many parents left jobs, paid privately for assessments, or experienced housing instability.
Siblings were emotionally impacted, sometimes becoming young caregivers.
“We haven’t had a family holiday in 7 years.”
Training in neurodivergence and school trauma for all professionals.
End gatekeeping, off-rolling, and unlawful practices.
Transparent EHCP processes and accountability.
Post-diagnosis pathways with practical, neurodivergent-led support.
Independent advocacy and better complaints systems.
A cultural shift from suspicion and blame to trust, inclusion, and early help.
“Listen to us the first time—before it becomes a crisis.”
“Families shouldn’t have to fight to be believed.”Read the full report by clicking below.
Date: Friday 9 May 2025 | Time: 1–3 PM
Venue: The Forum, Southend
Attendees: 20 parent carers (3 speakers)
MPs Present: David Burton-Sampson and Bayo Alaba
Purpose: Share lived experiences of SEND families directly with MPs to inform local and national change.
Key Themes Raised
Parent TestimoniesStories revealed delays in diagnosis, education exclusions, and parental trauma.
Children left without education; carers faced medical gaslighting, blame, and mental health strain.
Voluntary groups like STRM were described as essential lifelines.
“To this day, she has no education.”
“Being neurodivergent, I don’t want to ask for help—I just want to be seen.”
Facts and Patterns IdentifiedDyslexia and ADHD (especially in girls) plus AuDHD often go unrecognised.
Maternal neurodivergence and postnatal mental health needs are overlooked.
Eating Disorders, Autoimmune Conditions, Ehlers-Danlos syndromes, Postural Orthostatic Tachycardia Syndrome, Hypermobility, Epilepsy and more are linked to diagnosed and undiagnosed neurodivergence.
Families frequently encounter delays, misdiagnosis, and a lack of support.
Systemic IssuesSchools often refuse to adapt, discourage EHCP applications, or push families toward home education.
Care Bridge and The Lighthouse Centre were seen as ineffective or dismissive.
Families described an exhausting cycle of referral-rejection-referral.
Professionals are perceived to collude, leaving parents mistrustful and isolated.
MP ResponsesDavid Burton-Sampson MP:
“It’s wrong that people have to wait this long… This has got to be fixed.”
Bayo Alaba MP:
“SEND is one of the biggest issues raised on the doorstep… We all have a role to play.”
Feedback from Families100% felt heard at the event.
96% said their story helped raise awareness.
87% learned what MPs can do; 79% felt more confident engaging with officials.
Questions Families Asked MPsWill SEN funding be ringfenced?
What support exists for neurodivergent young people after they leave school?
How will devolution affect local SEND services?
Why are FASD services and the Adoption Support Fund cuts not addressed
About This Report
These recommendations are grounded in the real experiences of families navigating the SEND system across Southend, Castle Point, and Rochford. They are informed by:
· 53 local parent carers who completed STRM’s in-depth SEND experience survey
· 20 parent carers who participated in a dedicated in-person session focused on SEND reform and local accountability
· The collective insight of STRM – SEND the Right Message – a grassroots, parent-led charity with a membership of over 1,300 families across Southend, Rochford & Castle Point.
These voices reflect a powerful body of lived experience, consistently raising the same systemic challenges:
· Delays, gatekeeping, and inconsistencies in support
· Exclusionary practices and school-related trauma
· A lack of neurodivergent-informed training, pathways, and mental health provision
· Inequity across boroughs and insufficient local accountability
· These five core themes aim to support MPs, policymakers, and public services in championing reforms that are inclusive, neuro-affirming, and based on what families say they truly need. As well as championing the needs of the 80% of children with SEND in mainstream settings, those most at risk of being unseen, unsupported, and excluded (particularly when the narrative is parent blame and they cannot receive a diagnosis due to the strain of NHS waiting lists)
Read the full report by clicking below.
We are a ‘ by parents for parents’ registered charity.
Our mission is to improve the lives of families in Southend and Essex whose children have been identified or are suspected of having specific educational needs and/or disabilities.
SEND the Right Message Charity is registered in England.
Charity Number 1193572
